Contents
Considering a hysterectomy for PMDD / severe PMS
- 23 reasons why I want a hysterectomy for PMDD / severe PMS
- “How did you get your doctor to agree to a hysterectomy for PMDD?”
- 29 days until my hysterectomy for PMDD / severe PMS, aged 35
- Nulligravida (woman who has never been pregnant). 25 days until hysterectomy for PMDD
- My pre-op concerns about how orgasms would feel after hysterectomy
- Inspiring hysterectomy for PMDD success stories!
Hysterectomy surgery and recovery
- The run up to a hysterectomy for severe PMS / PMDD – general advice
- Evening before hysterectomy for PMDD a doctor tries to talk me out of it
- Day of the hysterectomy for PMDD, I’m first on the list!
- Day 1 after a hysterectomy for PMDD
- Day 2 after a hysterectomy for PMDD – learn from my spicy food mistake
- Day 3 and 4 after a hysterectomy for PMDD
- Day 12 after a hysterectomy for PMDD – it’s easy to over do it
- I feel so good I could weep with joy (day 27 after a hysterectomy for PMDD)
- Beautiful mental clarity. Life after a hysterectomy for PMDD
- New Year reflections – 11 months after a hysterectomy for PMDD
- NYE reflections: child-free, alcohol-free Christmas (22 months post-op)
- 2 years 6 months after a hysterectomy for PMDD – feeling great! (Aug 2014)
- 5 years after a hysterectomy for PMDD: Changes (Feb 2017)
Readers’ questions, stories and thoughts
- “How did you get your doctor to agree to a hysterectomy for PMDD?”
- ‘Please, please would you give me your opinion..why do we always want what we can’t have!’
- ‘Pissed about politics being jammed up MY damn uterus’
- ‘Will I be able to orgasm after a hysterectomy for PMDD?’
- “I feel like I am finally me”
- “Which one of us wants to admit to wanting to die 12 times per year”
Miscellaneous
- I’m interviewed for Canadian magazine Flare
- Quirky book on sex hormones, a useful introduction to which does what!
- Sylvia Plath’s suicide traceable to severe PMS/PMDD?
- Laparoscopic hysterectomy video – amazing and strangely comforting
- Brilliant article on depression
- About the author of this blog, Ms Jekyll & Hyde
Ms Jekyll & Hyde suffered from a life-destroying form of the endocrine disorder Premenstrual Syndrome (PMS), also known as Premenstrual Dysphoric Disorder (PMDD). Determined to be cured, at the age of 35 she elected to have a hysterectomy with removal of the ovaries (LAVH BSO), on the NHS, in London, in February 2012. The operation is currently the only permanent cure for severe PMS/PMDD – it has been very successful! This blog is independent, all views are her own.
Life after hysterectomy for PMDD / PMS [aged 35]. UK 
I have been suffering with PMDD for 8 years since the birth of my third child. I think I had it for years before that but was undiagnosed. I’m desperate for relief. I also have had several abnormal paps, 2 colposcopies and 1 LEEP procedure. It’s obvious that I need to have a partial hysterectomy but my doctor seems to enjoy harvesting me every year 🤬. I go in on Friday for my yearly pap and I am going to discuss why I NEED a full hysterectomy. I’m 40. Please send me an invite to the group. Thank you.
I have been suffering from PMDD since I was 12 when I started my period. I tried to get Drs to listen to me about my severe symptoms and none of them listened. I have been on antidepressants for over 20 years now and finally broke down in front of my Dr and demanded to be referred to a gynecologist. I now feel like I have been heard and my surgery will be later this year. I feel like I see a light at the end of the tunnel. I am a little terrified about life with menopause and what that entails but the thought of life without this seems so worth it.
I have felt so alone with all of this so I can’t explain how happy I am that I found this through my Google search for answers. I have put in a request for your Facebook page with absolute excitement.
Hi you godsend of a human being,
Could you kindly send me the link to the secret Facebook group?
I’m currently fighting for my right to mental freedom and sanity here in the US; they’re not nearly as receptive it seems as they are in the UK.
Thank you so much,
Liz
Oh yes, please send Me Facebook link! I am a
Mother of 4 kids, just turned 41 and am battling PMDD demons. Doing all the research I can on my own so that I can be best educated as to the next best step. Thank you so much.
I had PMDD for years. After trying all sorts of various medications I ended up having prostap injections which isn’t something for PMDD but it puts your ovaries to sleep so it’s like a temporary menopause. That worked great for me every 3 months having an injection in my stomach. After a couple of years I came off the injections to see if when my ovaries woke up I still had PMDD as my hormones could of come back differently, this unfortunately for me didn’t happen so the next step was a full hysterectomy. Although i didn’t want to lose the option of having more kids I couldn’t take it anymore, I don’t regret it now it was the right thing and the best thing I’ve done.
Hello! I actually live in the US, but am desperate for help. I have PMDD and have tried many physicians. The last one I saw last fall made me feel like I had FINALLY found the answer. She put me on seasonique and said I’d only have four cycles a year, and to take Prozac during my menstruation. Wrong! While it did level out my hormones, and no more PMDD… I gained weight bloated, killed my sex drive and I had bleeding of some sort 90% of the time. I’m off of it now, but the PMDD is back with a vengeance, I had actually forgotten how bad it felt and it really hurts my relationship with my husband. I’m not sure how’d you add me on Facebook? I have my settings set to private, but I’ll take off some of those if you can add me please! The only reason why I haven’t had a Hysterectomy is I’m afraid I’ll gain weight and the doctor who prescribed seasonique said it would give me a whole other set of problems. Thank you!
I would get off the meds, I bled all the time too.. I had a hysterectomy and he only left a small part of an ovary. I have never felt better!
I had HORRIBLE almost daily migraines and they completely stopped after the surgery! Doctor said from hormones. Anyway you won’t go through menopause if the doctor leaves an ovary or part in. I am not a professional but please talk to the doctor about this! It isn’t always bad. I felt wonderful after I recovered.
I can’t even begin to say how grateful I am to have come across your site. I have severe PMDD (days 14 – 28) at age 37. I’m considering a hysterectomy. I seem to be VERY progesterone intolerant. My question to you is – are you taking progesterone supplementation now? If so – how do you feel on progesterone? I’m scared to ever take it again but am assuming it’s part of the HRT regimen.
I was diagnosed with pmdd 3 years ago after 10 years of thinking i was crazy and was put on prostap injections which are great. In that time though I have been given numerous HRT and haven’t been getting on with any of them I know 2 of them was tibolone and evorell patches and I have now told them I have had enough and want a hysterectomy. My gynecologist has told me without HRT and only being 33 I am at high risk of osteoporosis and I’ll need a bone scan in a couple of years time if I don’t take them. Does anyone know of anything other than HRT even something holistic that can help. I feel well out of my depth and can’t seem to find a book or site that is really helpful to my situation. Any advice would be great im not on fb
I was diagnosed with PMDD. I was also diagnosed with BiPolar Depression. Six years ago I had a hysterectomy with my cervix, both Fallopian tubes and one ovary removed. Since getting my first period at 11, my mood whenever I got my period was depressed and angry. I’m 50. I had the surgery six years ago in 2011. I had periods that lasted weeks, I had periods that were painful and needed opioids for, I went months without getting one. I once went over a year without getting a period. I was diagnosed with PCOS. On my psych meds, the doctor blamed them. I had to be on them, I was suicidal. Yes, made attempts. I was diagnosed with Lupus about two years before the surgery. Finally a GYN oncologist believed my mother for what I’ve been through with my period before the psych meds. Laparoscopic surgeries (2), CT scans, ultrasounds and Manuel exams never pointed to what the pathology report said about my uterus, I had an average sized fibroid as well as what is called hypertrophic lining of the uterus. Meaning the lining never shed. I also had endometriosis in my cervix. I don’t understand how many physicians missed that in a PAP. My uterus was about 30g larger than a normal uterus. How did the prior surgeries miss that. Of course the ovary on the left had two cyst and one ruptured during the procedure so it was removed. The right ovary remained in because Lupus patients are a high risk for osteoporosis and the surgeon felt it better to leave one in. Now, 6 years later, I am noticing once again these horrible mood changes. My suicidal thoughts. Trust me my psychiatrist is on high alert. I think it is incredible that doctors would do this surgery for PMDD. It can be a Godsend. I have not had thoughts like that in six years. I’ve been able to finish my education, yes, in the medical field. I’m just can not work because I take a medication to suppress my immune system. I suggest to all women who make this decision, make sure you have your children before, it’s too late once it is done. I also would tell you to get the ovaries removed. You go through menopause right away but it’s over quicker. Most of all, do your research. Make sure it is something you feel you need for yourself and if you have a spouse and/or children. Do not do it for anyone or anything else. I was told I had a biseptate uterus and was never going to get pregnant. I had no idea I could have had a chance at a child. So make sure there are no regrets.
Hi. Very interesting reading. It’s all starting to make me feel like I’m not losing my mind after all. I have bad endometriosis and had surgery last year to remove lots of scarring, I had a cervical abrasion and also my tubes tied.
Over the last 6-8 months I have the same cycle of a fortnight of each month filled with rage and tears and being buzzing in the middle of the night, can’t sleep. The other fortnight of the month I spend regretting all the screaming matches and apologising to hubby. I try so hard not to take my rage out on the kids but find myself kicking a toy that’s not picked up or shouting about cleaning teeth at bedtime like some deranged mad woman. I completely hate myself.
I’ve requested to join the Facebook page below, but in case this may be different from the ‘secret’ one you refer to below, please could you invite me?
I go through the same thing and I have been diagnosed with pmdd. But I can’t get the sea to give me a hysterectomy. I also have fibroids. I’m 48 and already have 4 kids. All adopted. But instead of a hysterectomy I got an iud. Now I may have to put up with bleeding nonstop for 3-6 months. And feel like I’ve been on Prozac forever. Most drs. I tell I have pmdd don’t even seem to know what it is.
I feel like I’m going mad. Sat in the spare room crying while trying to find cures for the pmdd ive had for 30 years! I took fluoxetine 60mg for 3 years and I never reared its ugly head but since the gp changed me to Duloxetine (fybro pain) which is the devil, I thought enough with the meds just pull my effing ovaries out plus I might get my sex drive back, (im seriously dead down there). After sobbing to the gp on thursday I have a consultation on august 30th if agreed I could have surgery 3 months later. Problem is…how do I cope until then. I suffer 28 days a month and its come back hard. Im soooo angry and need to isolate myself from everyone incase I kick off. Im actually a very chilled person, into minfulness and positive energy I love a good laugh! Im a frigging therapist ha ha how can I help anyone they’ll think I’ve been possessed. I have a 4 year old who is my greatest love (im crying again) I shouted at him yesterday really loudly god I feel so much guilt hes never seen me like that before, even my partner has got used to me being fine due to the meds but if he looks at me now I want to scratch his face off and kick him out. My pmdd is in control and im lost. The mad thing is I know this is not me, its not me at all. Its my ovaries those shitty peskey ovaries! In one week of being med free my life has stopped, frightening how powerful it is.
Hi, do you run facebook group. Life after hysterectomy for PMDD please? I can’t find it.
I’ve suffered from.PMDD for 18 years, officially diagnosed and on way toto hysterectomy.
Thank you Sarah . In from and love in UK
Meant, I live in UK (Silly predictive text)
Hi, I’ve sent you an invite to the FB group
Hi, would also like to follow the facebook group thanks, Lorena Egas, from Ecuador
Hello, Could I please join your Facebook group? I have been diagnosed with PMDD. My gynecologist has agreed to surgery and Im meeting my surgeon tomorrow about having my ovaries removed but not sure if my womb should be removed too? I am from the UK. Kind regards, Tracy
Can you send me a link to your Facebook page please?
Do mind sending me an invite too? Thank you!
Hi I have suffered since I was 11 now 35. This forum has been a god send hearing others who have or are experiencing similar. Is there a support group on Facebook? Xx
After going through hell & back, suffering a mental breakdown, nearly loosing my marriage in the process, a locum GP said ‘severe PMS’…6 months later and feeling ‘half right’ after monthly Prostap injections, I’m now facing a hystoscopy & then a partial hysterectomy. I feel that I have ‘winged’ it the last 6 months and the dread of falling down again following a partial hysterectomy has me worried, in fact petrified that it may take several HRT attempts before finding the one that suits? Any advice please 😩😩
Hi, I’ve just googled ‘partial hysterectomy’ – so they are planning to leave your ovaries in?! These are the culprits and MUST be removed to remove the PMDD symptoms. Best wishes
Yes.. was going to comment exactly the same. The procedure for pmdd Hysterectomy is full hysterectomy with both ovaries out.. THBO (total hysterectomy with bilateral oophorectomy)… If you leave ovaries you’ll still cycle. If you leave womb you’ll need to take progesterone to protect it… And for many women, the progesterone brings with it pmdd type side effects x
My wife has been suffering from what we believe is PMDD for nearly 4 years now, ever since the birth of our boy.
Before this my wife had very irregualr Periods, once or twice a year, so the symptoms of PMDD were not apparent. Since the birth of our son however, she has at the age of 40, started having ‘regular’ periods every month and they have been just horrendous for her. About 10 days out of every month she suffers from depression, fatigue, tiredness and hears voices. They are not as direct now, but this behaviour meant she had to spend some time in a psychiatric hospital. This was extremely unpleasant and i’ll cut a long story short, after many GP’s advice and Doctors’ opinions, she finally got an appointment with a Gynaecologist.
This Gynaecologist is convinced it’s PMDD and has recommended a Hysterectomy as we have finsihed making the family any bigger than it already is.
Firstly though, she has started my wife on injections of Zoladex. It’s an implant that stops the body producing Oestrogen. If this works there should be an improvment in my wife’s condition over the three months (3 injections Monthly). If this is so, then they will proceed with the Hysterectomy.
It’s been four years of dark tunnels with some semblence of light at the end then plunging into darkness again. I’m a hopeful person by nature, and i love my wife dearly, but it gets very difficult sometimes.
My Wife made the mistake of looking up side effects of the implant on the internet and feels conflicted about it now.
I just wanted to know if there really is light at the end of the tunnel after all.
Hi, I think ANY medication can seem frightening if one gets hung up on possible side effects. The women I’ve come across online over the last seven years or so, are overwhelmingly positive about their time on Zoladex, or another ‘GnRH’ drug. It’s a brilliant test to see if a hysterectomy (with removal of both ovaries) will remove the PMDD symptoms. My doctor kindly let me stay on a GnRH for longer than 3 months, as I was/am child-free, to give me longer to decide about proceeding with the op.
I suggest your wife joins an online support group, such as: http://www.facebook.com/groups/ukpmddsupport/
If you scroll to the bottom of this blog, there are some links to good resources. Such as these books:
http://www.amazon.co.uk/Its-Ovaries-Stupid-Elizabeth-Vliet/dp/0743210565/ref=sr_1_1?s=books&ie=UTF8&qid=1327584318&sr=1-1
This one has a very useful section on post-natal depression:
http://www.amazon.co.uk/Womens-Moods-Hormones-Emotional-Health/dp/0380728524/ref=sr_1_1?s=books&ie=UTF8&qid=1327584466&sr=1-1
Best wishes
You sound lovely. My partner has had to put up with me for 7 years. When we met the pmdd was on full display. One day we went to town and he was asking why I was in a mood I snapped loudly in a bus station!! “I feel like putting my head through that f**king window”, he stayed with me and im so thankful because the pmdd has tested him. I’m glad the world has good guys like you around who know it isn’t the real us. I hope the treatment works wonders for your wife.
I’m 40 an after years of PMDD an a hole load of period problems. Finally I’m 4weeks post op TAH/BSO…seeming to be recovering nicely but Panic attacks still here could this be a result of HRT ? (Elleste Solo 1mg daily) only hope it gets better, as at moment I’m thinking well that was drastic an has only stopped the physical side of things.
Hi, I’ve sent you an invite to the FB group for PMDD/hyst. Best wishes
Hi Lisa
I’ve read a lot of people with the same… For weeks after the op your body is still releasing oestrogen that’s stored in your tissues. It’s still VERY early days so try not to worry… There’s a good group on Facebook called pmdd hysterectomy and life after you might like to join… Lots of women in exactly the same boat and I think you’ll find it comforting x
Ok so I thought maybe I had bi polar and stumbled across PMDD. it seems my moods are Around the same time of month. I’m at a loss. I do have times where I am extremely happy etc. so not sure which direction I should go in
Hey Christy… First thing to do is download a symptom tracker app and track your symptoms daily. That builds up data as your proof to take to doctors etc.
https://giaallemandfoundation.org/symptom-tracker/
The Gia Allemand foundation website has great resources and advice… There is a piece on there about the confusion between bipolar and pmdd. They also have great peer which can be found on FB or via their website x
Hi there, I would love to be added to your facebook page please. Frankie
Hi, I’ve invited you to the ‘secret’ Facebook group. There are other PMDD Facebook groups too, search PMDD when logged on. Best wishes
Very happy to read this update. I really enjoy your blog and it resonates so much. I run the UK pmdd support page on Facebook but would really appreciate being added to your group as I’m currently on gnhr spray and likely that at some stage heading to the big op… It’s scary! The fb page specialising in pmdd and hysterectomies scares the bejeezus out of me.
So pleased of how you are on your journey.. Genuinely makes me happy ❤
❤
Hi, can I be invited to the secret fb page pls? I am currently under care of Prof Studd in H St and I am a diagnosed PMDD sufferer considering hysterectomy.
Can you add me to your U.K. Group please?
I read the whole of this blog & Dr Studd’s research before I went to my gp. I’ve now had a total abdominal hysterectomy with bilateral salpingo oophorectomy performed on 6th Dec 2016, aged 44. I now know that I’d been suffering since I was a teenager, but at the time I didn’t know any different. With hindsight I should’ve had this sorted years ago. As I nearly lost my husband with Jekyll and Hyde characteristics. My old GP diagnosed depression & gave me antidepressants, they never worked. We moved house & my new GP eventually took me off them, too many side effects. After having an absolute break down away from home at Christmas 2015, I did research & found all my symptoms were that of severe PMS/PMDD. I was very lucky I have an amazing GP who tried me on mini pill which didn’t work bleed non stop for 2+ weeks. Referred to a gynaecologist, appt was about 10 weeks later, really thought I would have a battle on my hands but I had hubby with me & doctor had a fantastic letter from my gp. My symptoms were severe – suicidal, intense anger, isolated, no interest & the list goes on. He put me on Zoladex to bring on the menopause, to make sure that the hysterectomy was the answer. I was like a new woman after my visit to see my consultant he agreed to doing a hysterectomy. Three months later I was having surgery. I lost all my friends because of this. To all those woman who suffer from this debilitating illness please get help.
Hi, I recently learned about PMDD and spoke with my OB/GYN. We have scheduled my hysterectomy, but now in the aftermath of my cycle, when I feel good, I am starting to second guess this decision. I have a voracious sex drive, much stronger than my husband’s, but I love it and have earth shattering orgasms. I am really afraid to lose this. Right now I’m feeling it might not be worth it, but my cycle has been coming 2x per month, so basically I cannot function during half my life. I guess I just need to vent about it and am looking for support through it from others who understand. Can I be added to the online/Facebook group?
Could I please have a Facebook invite.
Hi, can you send me an invite to your Facebook page please? I suffer from PMDD which I’ve successfully treated with sertraline for the past 18 months but I’ve gained 3 stone I that time and I’m also finding it’s becoming less effective. I’m not getting the same rage as I did but I’m getting awful depression around ovulation and menstration, it’s extremely deep and I find it hard to cope with life when it hits, I certainly can’t cope with being in an office and have taken to escaping to my car to be alone or to just cry.
I’m coming off the sertraline now and the doctor wants to try something else but I’m afraid of firstly the time when I have nothing and the rage / full force of this returns (so is my husband!) and b) what on earth im going to try next, I don’t want another ssri and the pill has never agreed with me, I thought wellbrutin but I’m in the uk so I don’t think I’ll be able to get it.
My sister had a hysterectomy for it last year and hasn’t looked back she said it was the best thing she’s ever done, she feels like a new person. I would like one too but I honestly don’t think my gp will take me on 🙁
PMDD is so awful, it seems to be looked upon as a silly little inconvenience rather than the serious mood disorder that it actually is. Before the Sertraline I was literally ruled by which day in my cycle I was on and suffered PMDD 3 weeks out of every 4, with symptoms ramping up as my body got ready for ovulation and not boating until that magical day on about day 2 of my cycle when I felt normal!!
Hi, FB invite sent
I’m 47 and have suffered sin my teen years. The last 2 years have been like hell. I’ve tried medications and natural supplements and still no change. Considering a total hysterectomy as my OBG/GYN has suggested it. I just don’t want a whole new set of problems but at this point I’ve done everything else. Any suggestions would be appreciated. Thank you!
Hi , I have had a full hysterectomy around 8 years ago . Sadly I still saffer badly from PMT as well as pain where my left ovary was , painful boobs and period pains . Does anyone else still suffer ?
Hi Sara, yes I’ve had a full hysterectomy 5 months ago and I’m still getting all the same horrible symptoms of pmdd as before. They may not last as long but it’s soul destroying as I really hoped it would be sorted with ovaries gone. I’m looking very pregnant writing this as bloated and lethargic as awake for hrs last night unable to sleep and cravings etc. I feel I’m ovulating and my body is acting like it is! I don’t know where to turn next or if is this is some unknown affliction I’ll have to live with for the rest of my life.
Hello Ruby,
I just wanted to see if you’ve had your HRT adjusted? I was similar 8 weeks ago and doc. Increased my estrogen and lowered testosterone which has me back on road to recovery. I hope that may help you. Balancing hormones is a fine art and you really need an expert in hormonal health to help. Xx
Hi, Im 33 and have suffered with severed PMS / PMDD since the birth of my second child 2 years ago. I have seen a NHS specialist who has diagnosed me with the condition and put me on Zoladex for 3 months. I have completed this so awaiting my follow up in Feb to discuss moving forward.
I have been told i’m too young for a Hysterectomy but this seems to be successful in some people. I have been pretty much symptom free since i started Zoladex.
Am i too young for a hystorectomy? how do i move forward? hormones are confusing me.
I’ve been suffering from this for about five years now. Im newly remarried this spring, and am 42. I just started my period today, and the past two days I’ve been insane and it’s having its affect on my marriage to a man I adore. I’ve tried Prozac in Oct. 16 and I gained 20 pounds. I’m now on Wellbutrin, and last months period on it wasn’t as bad, this one was the horrible normal one. I can’t take it anymore, my husband says I act like a different person before my period and I feel it too. I’m now considering a Hysterectomy because I don’t know what else to do. I live in Indiana, does anyone have a Dr. to recommend out of Indy? Thank you for any input. I also would like to know of the negatives of Hysterectomy, weight gain, mood swings? Is there a support page I could join?
Hi Heather, I’ve sent you an invite to the Facebook group
Dear Heather,
I have also suffered from this for about 5 years. So desperate I couldn’t think straight! My periods are still a bit rough – but not nearly what they were, which is giving me hope that in time they could become better. This is what I have been taking on a regular basis – well, sometimes irregular because I do forget, but then I realize I’m feeling worse and remember what I’d forgotten to do! 🙂 B complex + extra liquid B12; Fresh Milk thistle – I grind it myself just before taking about 1 – 1 1/2 teaspoons; Valerian Root extract (Christopher’s); Skullcap (liquid extract – no alcohol) The Valerian and Skullcap I take together in the morning and at night and as needed for my nerves / anxiety through the day. For Migraines – this is essential – take Feverfew (extract – no alcohol). It’s bitter, so I put it into a capsule and take it that way. This is a preventive – so take it every day. I take mine first thing in the morning so I don’t forget. If one small capsule isn’t enough, try taking one in the morning and one in the evening. It won’t work so well if you only take it when the headache/migraine is already arrived. I live in a small town without much access to things locally, so do a lot online…. iherb.com is a great resource; herbco.com is also good for fresh herbs.
This isn’t quite a “cure” – but it has gotten me closer than I have been in a long time and to a more “manageable” state…
May I join your group on Facebook please. And if anyone has an idea of who could help me with a PMDD discrimination case, against an employer who continues to harrass me after the WON an Employment Tribunal where nobody seemed to take this illness seriously, I’d be grateful. I represented myself due to financial reasons whilst suffering from PMDD, on Citalopram and Diazepam and I delayed my hysterectomy/disability for it as the process took nearly a year since I collapsed and left my job following bullying. I am now in the process of pushing ahead with my hysterectomy having felt like killing myself many times during the process, and despite this, my ex-employer is now seeking costs.
I am shocked by how PMDD was treated during an employment case.
I would like to be active in changing the perception of this disability whilst managing my own imminent transformation having suffered for 30 years, since age 11.
Thank you for this forum!!
Hi, I’ve sent you a Facebook invite. Best wishes
I have a question for women/ladies that have experience with pmdd, or even guys that have discovered things that help. My wife has pmdd, and …..I’ve tried all the usual things, i.e. Hot water bottles, heat wraps, cold, rice socks, rubbing, and nothing helps. Heat actually makes her more uncomfortable, the only thing that helps at all is mydol, and that only helps with the cramps. I helped her get off once, thinking an ……orgasm might lessen the symptoms, and it did, but there was so much blood, as always, that it horrified her and she never wants to do that again. All I can do most months, is make sure she eats and especially drinks enough , and on the worst days, just drag her to bed and let her sleep it off. A couple times, she was in bed for a couple days at a time, and barely even got up to use the restroom, or eat. I had to make her drink , and she bleeds so much she ends up with low iron and weak. I’ve tried comforting her, and of course I keep lots of gummies and dark chocolate around for that time of the month, and try to make sure she eats at least some foods high in iron, to replace what she loses, but other than a rare occasion when I get to hold her and rub her head and back, most of the time she is in so much pain and so miserable that talking, or touching her just makes her more miserable . She has considered an ablation, or a hysterectomy, but I think she’s afraid I want to have kids at some point. I’ve tried reassuring her that I really don’t want to have kids, many times, but…..it hasn’t worked. She can’t take birth control pills, because they give her blood clots. I’m just wondering if there is any over the counter remedies or aids that can help with her pain and blood loss. Or even home remedies. Her depression and anxiety levels are just through the roof. Those parts i can help with/handle, I just feel like an ass, not being able to do much for her. I think an ablation or hysterectomy would probably be best, and the most healthy option open to her, but I don’t even know how to convince her for good that I really don’t want to have kids. I mean, I’m 35, and she’s 49. I’ll be damned if I’m going to put her through pregnancy again at that age. She already has 2 kids from her previous marriage , in their 20s, and I really don’t want kids of my own. So……I’m just lost, and would really appreciate any suggestions. Thank you.
Oh my days you sound like an amazing partner! Well done! You are doing great!
You can both get online support from the pmdd association. They put you in touch with a peer who has been through it all themself and come out the other side.
Natural options include incorporating lifestyle changes including getting enough sleep, reducing stress, and choosing a healthy diet. Recommended supplements include vitamin D3 (taken sublingually/under the tongue) and calcium. This link includes several options for treatment including related studies: http://www.aafp.org/afp/2002/1001/p1239.html#afp20021001p1239-t7
Personally I have a period tracker and 5 days before I am due on I take 150mg of 5htp in the morning and the same again at night. I take an L- tryptophan as well each morning. I wouldn’t get out of bed if I didn’t. These cannot be taken with anti depressants so make sure she doesn’t take them if she is on them.
Solgar women vitamins are the best. Spend the money, expensive but natural and worth it x
not much man in this world can love and stay with a women with PMDD. I wish man were like you. Here is link…you should try it..maybe it will work. http://orthomolecular.org/library/jom/1998/articles/1998-v13n04-p215.shtml
Dear Nathanial,
Iron deficient anemia can cause more bleeding and so a vicious cycle continues…. have her take an iron supplement – preferably one that is a time-release to avoid constipation. Hormone imbalance may also play a part, so try Chasteberry. It is a “normalizer” herb – no matter what hormones are out of balance and regardless of which way (too much/too little) it will bring things back into balance.
A good B-complex is also always a good idea.
🙂
I’m 36 and if I’m not on mini pill or iud, the bleeding/pain gets out of control. The pill and iud have their own side effects though. I suffer the same as your wife. I am waiting to do a procedure myself (ablation or hyst) I’m afraid that I’ll want to have a baby in the next couple years, so I’m waiting. I also had to get iron infusions in the past 2 years because of heavy bleeding. Your wife should get her ferritin (iron storage) checked by a hematologist, not a general practitioner. I found general docs are not educated enough on the subject to deal with anemia issues. Getting her iron up can help with the depression and anxiety and can possibly help with the heavy bleeding. The more anemic you become, the more you will bleed, seems contradictive, but that’s how it works.
I have been living with this since I was 19 and at 31 felt like I was having a mental breakdown every month.
Gp told me I’d got postnatal depression until I started doing my own research and found my symptoms were much more pmdd than pnd!
It’s fabulous to see someone else who has tickef ask the same boxes and has found a way out of it!
Wonderful resource. Thank you!
My experience up to this point has been very dollar to yours.
Post BLO and Hystetecyomy: 9 days:
I’m wanting to get the implants for oestrogen and testosterone as you mention. Can you please share with me the dose and schedule you’re on?
Hi, I have 6 monthly estrogen implants (50mg) into a buttock (some women have them in their stomach). And each week I use one sachet of ‘Testogel’ testosterone gel (50mg) – this is because currently I can’t get a testosterone implant on the (UK) National Health Service, they say it’s due to lack of demand.
Hi, Hi, I’m 44 and have suffered with pmdd since my early 20’s. I’ve spent years seeing doctors, consultants, nutritionists’ etc. as I tried to figure out what was going on with my body. I eventually was diagnosed with pmdd 2 years ago. My symptoms include binge eating sweet & savoury junk food, mood swings, insomnia, surge in libido and bloating (looking heavily pregnant). Since diagnosis, I’ve tried the natural route, herbs & vitamins etc. but apart from being very expensive, none of my symptoms disappeared. I also have IBS but it’s not nearly as debilitating as having pmdd.
I then tried taking the pill (Yazmin) back-to-back with fluoxetine for a period of time and again this did little to alter the pmdd symptoms other than help with my mood. PMDD has ruled my life, dictating how I dress, how I look, how I feel etc. I even have maternity tops for my ‘pregnant’ days. I have been asked by people when I’m due as I look and feel pregnant and worn out and all I want to do is lie down and rest by huge, bloated belly and be left alone until it all passes and I return to ‘normal’ again, if only for a few days.
I am now still on fluoxetine but have started taking Decapeptyl just over 2 weeks ago. I am hoping to remain on this injection for at least 3 months and then all going well, have a full hysterectomy (with both ovaries, fallopian tubes and uterus). It has been a godsend to find this blog and read that other girls have these horrible symptoms too every month that change you into a totally different person. As I’m only on Decapeptyl over 2 weeks, I have had a few bouts of pmdd symptoms, namely the bloating and food cravings and none of the side-effects associated with Decapeptyl such as hot flushes or night sweats etc. Has anyone else experienced this? I had hoped that all pmdd symptoms would disappear as soon as I got the injection but perhaps it will take another month or two of the injection to finally put my raging hormones to sleep as they are so cyclical and dominant in my life with so long. Any feedback/advice would be helpful as I am hoping to proceed with surgery but was hoping to be totally clear of all pmdd symptoms before I have surgery.
Thank you for sharing this. I have struggled with severe PMDD my entire adult life. The worst for me is the depression and pre-menstrual suicide attempts. I have tried everything. I am now going for a hysterectomy next week and your blog, among other research, is part of the reason! Thank you. My story is at premenstrualdysphoricdisorder.wordpress.com
Thank you so much for this blog! I am a 38 year old mother to 3 (15, 14, & 2) and have been dealing with this since I was 11 years old. My surgery is in 24 days and I’ve been super nervous and kept questioning if I’m doing the right thing but your posts have put me at ease!
Hello! Thank you so much for this site! I am wondering if anyone might help with this question: I really would like to get the surgery, but cannot take HRT because I’ve had estrogen and progesterone positive breast cancer. If anyone has any familiarity or insights I would really appreciate it. Thank you! 🙂
Thank you so much for sharing. I feel confident now with my decision about going for the hysterectomy because of my PMDD. I wish we were neighbors! ❤
Hello
I’m so happy I found this, I really thought I was going mad, and no one understood what the battles in my mind were doing to me, I can 100% relate to every thing everyone as said, and I’m so great-full of this blog, I’m having a full hysterectomy in the next few days, I ad so many question and no one to ask, I was so scared about the op and how it’s going to affect me after and if I was doing this for nothing, I’ve been reading for the last few days, and I’m now so chilled and carm, and actually looking forward to the after days and knowing there is a light at the end of the tunnel, there is not much help out there of pmdd or pms as I call it, I’m 40 and been going through this for about 25 years, so thank you so much, my mind is at rest, just wish there were a place i could ask loads more question and people who are going through the same as me, xxx
Hi Erica thanks so much for ur message! I had my mind made up until read all the horror stories on line. Do u mind me asking but did u have injection to mimic menopause before ur operation? I just wondered how u felt whilst being on that and wondered if felt similar after the operation? As my gynae said if that suited me the operation would do but had alot of side effects on prostap like itching, thrush, still some mood swings bit feel my hormones are all over the place? I’ve noticed my anxiety is better though and alot of pmdd symptoms seem better as so hard to deal with that every month!! Thanks again your l blog been a godsend!!
Hello and just want to thank you for this site I have found, I have so many questions and no one to ask, until I found you, im having a full hysterectomy next week, I’ve suffered at least 25 years with pmdd/pms !! There are loads of site that tell you about hysterectomy, but none telling how it really is, so thank you, not really sure how to ask stuff on here, ! Once again thank you xxx
Day 9 after tah bso.
I over did it yesterday ( emptied the ash from woodburner because I was cold). Have been bleeding ever since. Not enough to be really alarmed but enough to be shocked.
From day 6 my night sweats have come back – to pre-zoladex levels – I.e. Lasting 5 hours with multiple clothing, bedding changes and a washing machine on overtime.
Why?
I’m taking 6 pumps estrodose across the day.
Can someone please explain the extreme night sweats, my appt. with specialist is not till August.
I am so glad I found this website. It literally saved my life after living 25 years with PMDD. I am 45 years old and had a total hysterectomy on October 2014. It was really my last resort in finding a cure. I had a breaking point from such severe suicidal thoughts that only got worse with each passing monthly cycle, and was about ready to end my life when I decided I would have a hysterectomy. It has been almost 10 months now and I feel like my life has just begun. I never really knew life could be so good. I had tried everything from strict diet, exercise, acupuncture, chiropractors, nutritionists, herbal remedies, light therapy, psychotherapy and cognitive-behavioral therapy, hormones, anti-depressants, anxiety meds, etc., you name it I’ve tried it.
PMDD sent me to a place of such hopelessness and despair. I felt like such a bad person each month from thoughts of anger and severe depression and anxiety. I had shut so many people out of my life and ruined relationships because of this disorder. I also have social anxiety which made matters even worse.
I have to say that the suicidal thoughts, depression and anxiety, anger, despair, hopelessness, mood swings, fatigue, muscle aches and pains, trouble sleeping, and extreme food cravings, etc., no longer exist. I still have periods of depression but nowhere near those that make me want to die to escape the pain. I now know that all the thoughts and symptoms brought on by PMDD is a disorder that I couldn’t control. PMDD is a terrible and misunderstood disorder and wouldn’t wish it upon anyone. For those that are suffering I hope you find help.
My hysterectomy was not easy or fun, but I no longer have PMDD and want to end my life. I currently take Elestrin(estradiol gel)0.06%. I was worried about menopause symptoms but haven’t experienced any.
I hope this helps anyone deciding whether or not to have a hysterectomy. I thank God everyday for answering my prayers and leading me to this site. Thanks again!!!
Jodi
So uplifting to read your story Jodi. Best wishes & well done fir getting through it. I am on the list for the same op.
Thanks Louise. I would love to hear how you’re doing. Have you had your op yet? Hope all is well!
Hi Jodi! I just stumbled upon this site and i’m so glad I did. I am 32 and scheduled for a hysterectomy on the 20th. I have suffered for years with severe PMDD. I have been diagnosed with anxiety, depression, bi-polar disorder and have been on every type of medicine. It’s sad but most docs I saw acted like they didn’t even believe in PMDD. I am praying that my complete hysterectomy will alleviate my horrible symptoms. I too am ruining relationships and have gotten to the point where I just can’t take it anymore. It is such a horrible thing to deal with but i’m so glad to hear some positive words here.
Kimberly
Hi Kimberly, thanks for your reply. How did your op go? I hope you’re recovering well.
Hi Kim, im 33 and in the same boat you were, did you have the op? how are you now?
Jodie
This is the same as me very helpful to read
Having mine in October
Hi Jodi
Just came across your post. I know it’s nearly 2 years ago so not sure if you ll get this! Just wondering how you are getting on as my story is so similar to yours.
Hi, have any of you ladies out there had just your ovaries out without the fully hysterectomy and had success? If so, which hrt did you use?
Thanks.
I’m 35 and I am having surgery Feb. 18, 2015. I’ve been wondering if I and my doctor are making the right decision. After finding your blog, I know now that we are. Thank you. Since I first got my period as a young girl I knew this day would come, I had just hoped that I would be able to have children of my own one day. I have been blessed with 3 step-children, so I am most fortunate. The words you have kept here in your blog have made the procedure less scary and me more brave to continue down the path I need for a stronger and healthier life. I can’t thank you enough.
Hi Charity, how did your op go? I hope you are recovering well. I too could not have children but have two teenage step children. I am on the list for a full hysterectomy and BSO. I hope you are feeling better.
Hi, I’ve been suffering since my early teens with PMDD, it’s taken me years for them to finally listen, I’m now 35, so it’s been a long wait. I’ve had the Mirena coil and zoladex injections which worked for awhile but my body seemed to have burned through them quickly. They’ve scheduled me for an oophorectomy in April/May, I was just wondering if anyone else had had the same procedure.
So glad I found this blog, it’s made me feel less alone.
Hi
I had a hysterectomy and my ovaries removed in sept 14, I’ve been on HRT for 5 years ( unopposed oestrogen ) for the last 18 months because I couldn’t tolerate the progesterone, hence the hysterectomy, since starting on HRT I’ve been really well with little or no depression except for a couple of times a year when I seem to take a big nose dive usually around October and march. I’m hoping this will stop now I’ve had my ovaries removed but I guess only time will tell.
Hi Sara
I too am on Zoladex. I am currently not taking progesterone though as I can’t find any to suit. I am struggling to get the right dose of hrt and have really bad joint pains but am hoping this will pass.
I was considering an opphorectomy but have now decided to have the full hysterectomy too as I don’t want to have to worry about trying to find progesterone to suit when I think this is the problem. If the mirena suits you though then I guess you could just have the ovaries out.
I do keep worrying that I won’t find even a dose of oestrogen that makes me feel well but I know I can’t go back (have tried mirena and loads of birth control pills) and feel that this is the only option left.
Good luck and hope it goes well.
Can you treat this even after a total hysto if it didn’t work?
Hi,
I had a total hysterectomy in September for PMDD and for the first 4 weeks I felt fantastic, unfortunately I now feel like I did before I started HRT 5 years ago, paniced anxious and depressed with suicidal thoughs. I’m really looking for how long it took anyone to balance their hormones after surgery and what changes they had to make
I had hysto too. It helped the cycles but getting my hormones balanced has been hell. Patches helped some but I still felt the ups and down. I got my first pellet injection and finally had more energy but mentally am having a break down. It was the last thing to try, I have run out of options now.
Try plexus triplex
I had my Oophorectomy at 30 for PMDD. I’ve been great since going through hell for years on all different meds before they realized this. I still have my bouts of depression and anxiety but where I didn’t want kids, I was on board but had to fight 10 male docs to have it done. It going on 13 years now and being on HRTS for about 10. My head doc at Mass General in Boston told me that when my normal menopause was going to happen, I have to go through it all again. This past year, My psyc told me I’m sweating because of night terrors and wake up drenched, Then my breasts got tender. However, still didn’t think anything. Probably because I’m so Confused constantly and my mind was so sharp many years ago and now can’t remember anything. I chalked it up to stress and age. I am either sleeping all the time or can’t sleep. I gained 20 lbs out of no where. I was losing my hair so bad I just cut it all off among other things. BUT I have been so calm since I had the surgery 13 years ago and now. I have rage like I did before with the PMDD and I really do care about a damn thing anymore and got real nasty and that is not me and put all this together. I’m on HRT’s. I’m not sure what to do. Doctors no NOTHING these days. I have such rare things that happen to me and even top specialists don’t have any answers. I wish all of you luck. I emailed my doc today to see if they can regulate my hormones. Obviously it’s an imbalance and everyone with this imbalance can’t take the same meds! Am I right? We are all imbalanced in different ways. So It took me four emails to get into detail about whats going on with me so when I go to the appt. they will be prepared. I couldn’t explain this in the 2minutes they give you and rush you out and with my Rage right now. I’m afraid I’ll snap. That’s what I’m going through just my story and terrified of getting PMDD back. It was so bad had hurt a lot of people and would remember it. I had it real bad. Thank for listening.
I have just read your blog and it is as if I have written it myself it is identical to my symptoms! I am desperate for a hysterectomy and just wanted to know how it was agreed. I too have seen Prof Studd and am being treated at Chelsea and Westminster now and having decap injections along with an implant, I have been told my womb lining is building up in spite of me taking progesterone for 7 days which I am highly intolerant too I have decided to not take it this month as suicidal thoughts are just too much. I would appreciate any advice you can offer as I just need that final push to demand the op but not sure how to approach it.
Kindest regards
Tracey
Thank you for your amazing blog on PMDD. I guess I live fairly local to you as am also from south of England, and you could have written my story for me with how I’ve felt.
Here I’ve suffered in varying degrees for over 20 years. Pregnancy for me is the only time the symptoms disapeer. After my last pregnancy my symptoms were slow to return and now they have hit me big time. And I’m done. I’m done with messing around with contracteption and SSRIs to try and mask the problem I just want to go away. I’ve put 2 stone on since Xmas and the fatigue is killing me and my kids/hubby are suffering with my symptoms, mood swings, irrationality and fatigue aren’t fun for anyone but these guys get the brunt of it. I used to love my pre-period hormones where I felt totally crazy for sex, now all the drugs I am on have taken that away and it’s taking a toll on my relationship – I’m curious how things pan out though as I’ve never experienced “normal” libido.
A couple of months ago I asked my doc for a hysterectomy and she actually laughed. I felt stupid. And I really don’t feel like I’m being taken seriously. I’m 37 also, and want this to end. I’ve got a doc appointment next week and I’m going to insist on a private referal (I have private healthcare through work so it may help, if it’s not covered I will pay) as I’m drawing a line under everything right now. I need to do more research (for my own peace of mind) but I think pretty much my mind is made up. Thank you for this blog it’s refreshing to hear things can get better.
Ps I’m a little worried hubby will stress about orgasms going or libido being even lower (how that’s possible I don’t know with these stupid drugs!) but in exchange for having my life back I’m sure it’s nothing in the grand scheme of things.
Thank you again.
Hi
I had a hysterectomy and removal of both ovaries 8 months ago, firstly, no need to worry about the orgasms – all good, and getting better. I think my libido is even better than before.
I am 47 years old, hadn’t started the menopause but had to have the surgery because my enlarged fibroid uterus was stopping me from passing urine. When the surgeon said that I needed the operation – I could have kissed him, the thought of finally getting rid of the cause of my monthly misery, the pmdd, or so I thought.
For the first month I felt very well. The GP started me on hormones and I just knew they weren’t for me – tears, headaches, and mood swings, so I stopped taking them after just three days.
My body went into crisis. All joints ached, my chronic back pain started sending pains down my legs , neck pain up into my head and jaw.
But worst of all – my monthly cycle seems to be so ingrained in my brain, that I still experience the symptoms – but they are not so strong, I can just cope, but can my relationship with my partner !!!
Prior to the surgery, around ovulation and then prior to my period I would feel low, tired, couldn’t be bothered with things that I would usually enjoy doing. Binge eating. The most destructive symptoms would be that my thoughts would change. I would change from a happy easy going woman, to paranoid, anxious, insecure, irrational, fixed ideas, tearful, needy wreck.
Despite still having a diluted version of the symptoms, I would still have the surgery again. It saved me, I was so tired of the highs and lows, and now I feel some relief. What I am trying to say to you is, don’t expect it to all go away if you have the surgery. For me it has helped, and I sense in time it will resolve itself. Another thing that helped me greatly, is non GMO fermented soy isoflavones – have a read, they are well worth a try.
Shelleyx
Hi there. I also suffered for ten years before I was finally properly diagnosed two years ago. I was still suffering, but not giving up. I had my total hysterectomy with everything out two weeks ago. I finally feel alive again. I am only thirty four but my family was complete. Know like you I am ready to help other women who are suffering. I really just wanted to say thank you.
Hello Leta, have you begun having menopausal symptoms and if so, were they disabling enough to warrant ERT? Have the majority of the PMDD symptoms gone away, esp. the depression and anxiety? Thank you in advance for your reply.
How did you get the nhs to agree? I asked age 18 made my mind up on not having babies from 10 (first period aged 10) dr laughed at me. I still feel the same. I dont want children suffer greatly two weeks pms then painful and heavy periods. Never had a smear as i hate the thought of anything to do with the thing. Ill be 33 in june and want to ask again the drs without being laughed at
Hi, I wrote this post about how I got the NHS to agree.
I have finally put it all together and I’ve been suffering with PMDD for at least 15 years. I am almost 40 and for years I would fall apart once a month and go into such deep depression that I tried to kill myself with an overdose once and ended up hospitalized again when I got very close to killing myself again.
I’ve been treated for about 15 years with SSRI’s but I still experience the fatigue, anxiety, depression, sadness, feeling of being lonley and lost.
BC pills I’ve heard can help but in the past they have made me nauseous and headaches etc.
My question is would it help to have just one ovary removed? This way I have some hormone production but not too much. I have 7 children so I absolutely do not need my ovaries!
Any advice would be appreciated.
Hi, I’ve never heard of anyone just having one ovary removed. I think you’d still have problems with one. The standard thing to do is to take HRT post op (unless there’s a specific reason why you can’t, ie you’ve had breast cancer).
I have heard and been told a total is the only way to go. My total helped but once you start HRT you go back into all the problems and without them you will drown in sweat all night, not have enough energy to get out of bed, ect…..every issue lacking hormones. My total helped but I got a pellet injection and now back in the same pmdd boat but instead of having 1-2 good weeks a months it’s all very hard.
I have been dealing with major hormone problems with physical signs for the last 4 years with out any answers. The first physical symptom I noticed was my chest swelling to double it’s normal size with fibrocystic type tissue. I couldn’t even hug my friends or my own children with out pain. The emotional torture and anxiety attacks I kept secret as much as I could chalking it up to just being me and something I had to work through on my own. After getting pregnant with my second child the symptoms stopped, after giving birth the symptoms emotionally and physically didn’t come back right away so I thought I was lucky and maybe some how my body reset itself. I was wrong. 6 months the symptoms returned and were worse, emotionally and physically. I was getting no where with drs, seeing specialist after specialist, changing family drs about 5 times and always leaving every appointment crying my eyes out. I felt hopeless and trying everything wholistic ally I could to get it figured out myself and getting no where. I was never taken seriously because of my age. If it wasnt cancer than I was being dramatic in the eyes of the drs. When in reality I was down playing my symptoms, the hell that I faced every month 2 weeks sometimes 3 before my period was something I needed to have delt with yesterday! Now it’s been four years of mental,emotional downs I have swelling and pain in almost every inch of my body, I can’t work, somedays it hurts to stand, muscle soreness everywhere, ovarian pain, chest pain, my legs swell if I stand for to long to the point where I can’t bend them. And it’s day and night when I start my period to when the symptoms start again. This is not me, I am energetic, active, busy, I can do it myself kind of girl. But when this starts I can’t get enough help. I can’t picture who I am or my life with out this problem anymore. I have no hope for the future. I have tried birth control, made it worse, I have tried wholistic remedies no improvement, I have tried depression medication, made me even more tired which just added to my problem, I have tried being out on progesterone which made my estrogen spike even more and made everything worse, now I am trying this drug that is suppose to put my ovaries and breast tissue to sleep…. It says it can take several months to work. I am hoping it does but with far less hope than what I started with. A week ago I stubbed on an article in flare magazine while I was at the gym. I read it and was thinking this is exactly how I feel. Then remembered one of the specialists I saw was a gynocoligist and she gave me the diagnosis PMDD, after only seeing me one time with no tests and prescribing depression medication, I refused to believe I had to live with this when it was so unliveable. I got put on vyvanse to help with the energy problem and I my surprise the symtoms went away for about 4 months then I’m guessing my body adjusted to the medication and went right back. Your article gave me hope, hope for something that fits and I can deal with. There is nothing worse than feeling alone and not having a real diagnosis. Because I know who I am and I know my body. I know this isn’t me, I know this isn’t normal. After being in a serious car accident when I was 17 and receiving over 40 surgeries to put me back together and then all of this, I can’t accept that this is what I survived for. I’m hoping this new drug shows me something and that maybe the next step will be a hysterectomy, something I don’t look forward to, but we all have to make choices from the cards we are given. And I hope this is a means to an end. Thank you for writing about your experience with such a small percentage of woman that deal with this the people around me can not relate and it makes you feel so alone.
I have read and re read your blog, im determined to get myself sorted out, im 35 with two boys and a long suffering hubby, I have been suffering since I started my periods, been on and off anti depressants, been fobbed off and ignored, been told most of my life if I lost weight it would all be better, I have been thin, fat, and still suffered, I just want someone to help me and say that I have pmdd, as I feel like I do have it, im thinking of going private,i didn’t know I could, im at my wits with it all, im being more assertive now,instead of coming out of an appointment as upset and confused as when I went in, im so happy that its worked out for you, xx
Hi all
Just wanted to leave an update note. I’ve been on Prostap for a year now, with Tibolone/Livial HRT. I posted back at the start, full of fear about what was about to happen and the decisions I would then be facing. Skip forward to now and all I can say is that I feel relatively fantastic! The dark PMDD cycle has finally left and I feel more like myself. I’m still waiting for my follow up consultation to discuss surgery, but my GP has been very supportive, maintaining my p/x and trying to locate me the right consultant within the local NHS hospital. I’m still scared about surgery but I know I could never ever go back to what it was like before. I can’t believe how much of my life has been wasted to this or how little most clinicians understand about PMDD.
Happy new year everyone
Jx
Hi Jackie K
Great to read your positive story – have you had your op yet?
I hope you don’t mind me asking – you say you are on Tiboline successfully. I am wondering whether to try this with the Zoladex I am taking, my worry is that any other progesterones I have tried have made me ill – was this the case for you or can you tolerate progestogens generally?
I hope you are still doing well.
Louise
Thank you so much for this blog. It gave me the courage to go ahead and organise to have my final ovary (right ovary) and fallopian tube removed* this year here in Australia. This condition is just horrific for sufferers. I suffered for 15 years. I had my surgery on 29 August 2013. I still cannot believe the monthly monster is no longer going to visit me. Ever. Again.
Your website means so much to me. I cannot thank you enough.
*I’d already had to have a total abdominal hysterectomy in Jan 2012 due to uterine fibroids and at that time they discovered endometriosis and removed my left ovary/fallopian tube. If I’d known the hell I was going to go through over the next 17 months with just one ovary left, I would have had everything removed at once. In terms of HRT, I now have an oestrogen implant which will last a year. It’s great – no hot flushes so far. I don’t need a progesterone implant due to no longer having a womb – that and being so intolerant to progesterone of course (ps: I’m wondering if I’ve already posted here some time back when my head wasn’t so clear ! )
Thank you, glad you’re feeling better!
Hi Getting my sparkle back. I’m in Australia too and really suffering. Having huge trouble getting any help from Drs. Can you tell me how you got help? I’m lost and my very supportive GP is too. I had a hysterectomy 3 years ago from pain and no one knew what was causing it, turned out it was food intolerances only diagnosed after surgery by a specialist dietitian. That gyno had no recs re PMT. Endocrinologist just recommends the pill and Zoloft and the psychs have run me through every antidepressant on the market. I use eostrogen patches sometimes three weeks out of the month. They are a life saver but it’s not enough. Any info help you can offer would be greatly appreciated. I’m in Adelaide SA. Thank you for this site too Ms J.
Here’s my post about how I got help. Best wishes with your treatment!
Hi Kate, did you have any success in finding someone in Adelaide to help you? I believe my daughter has this condition and I would like to find someone for her, either a doctor or specialist. Thankyou.
Hi! I just wanted to ask you how you are doing since your operation. I am 31 and have been suffering with bad PMDD for 10 years. I hear that Yaz helps but I am terrified of the side effects- including possible death! Also, it seems that the antidepressants (which I’m on anyway for panic attacks) and the vitamins, minerals, etc only seem to work as a bandaid. It seems that the only true cure for this is PMDD. Is it safe? Does it work for everyone to cure PMDD- or just some? Thank you!
Hi Marianna, here’s my most recent personal post.
Thanks so much for responding!
Hi. This site has helped me a lot. I’ve got a blogger site and have just started a web ring to bring as many pmdd, pms, women’s health sites together as possible into an easy to navigate community. I was wondering if you would like to join? More information can be found at http://pmdditsnotjustpms.blogspot.com/p/web-ring-page.html. If you need to contact us, we have a contact page there too. 🙂 Thanks!
Just startef with injection s to switch off my ovaries for a test … please tell me there’s a light at the end
Hi Ms Jekyll & Hyde,
I just wanted to thank you so much for this site! It’s the reason I am finally able to get the help I need for my PMDD (I’m 34). It’s such a long story that I have to write it to you another time (plus my LAVH BSO is due to be done in less than 48h!) but I just wanted to say how grateful I am. Because of you I was able to tell my (female) gynaecologist to refer me to Nick Panay or John Studd when she flat out refused to help me get the surgery. This was after having zoladex/goserelin finally be the thing that helped me feel sane. I know that if I didn’t have those names I would have felt so hopeless, alone and abandoned that I would have done something drastic.
Your blog and you have literally been a life-saver.
THANK YOU! xoxo
(p.s. hope to write to you again once I’m recovering, if that is ok?)
Hi, thank you for your kind words, I’m very moved to read that. I’m thrilled that it was so helpful and that you’re getting the treatment that you want (despite the struggles!). I wish you all the best for your surgery. Yes, please do write again.
Hi, I’m not sure I’m doing this right but I have a question. I wasn’t diagnosed with pmdd but everything sounds just like what I’m going through. I had to have a hysterectomy but they left one ovary. I still go through everything I was going through before the surgery. The mood swings and soreness. Is it because I still have the ovary?
Yes I believe it’s possible.
My husband does not and will not understand how I feel. He has no time for any chronic sicknesses. His ex wife went ‘psycho’ after her hysterectomy. He says I’m mean and I treat him bad. He says I argue and fight him constantly. He is against me getting a hysterectomy. I’m high risk for ovarian cancer. He calls me a hypochondriac. He says “you wish you had a bad illness!” He sighs when I ask to be rubbed, itched, massaged or helped in any way. He blames me for everything. Says I have an ‘entitled’ attitude. He pushes and he pushes and I hit him…. I smacked his head last night. Unfortunately this isn’t the first time. I know its wrong. How can I have patience and mildness while being pushed and treated like I’m ‘crazy’ and ‘psycho?’ Hitting isn’t right. I apologized but he will use this against me forever. He purposefully didn’t pay the therapist so I couldn’t go back. He hates me going to therapy. He is rude, selfish and challenges me countless times a day. When I’m feeling good and I am stable he acts like this. He doesn’t care. Its all my fault cuz I lost control. He loses control all day, every day he just brings me to the brink of madness and he doesn’t hit me. My anger is so strong. My mom thinks he is mean to my son. My adult daughter can’t stand him. He is a bully. He loves purposefully pushing me mentally and than acting innocent and blameless. Its my second marriage. My ex drank and threatened to kill me a lot. My husband likes to say ‘you obviously can’t get along with any man.’ How sad this is. I know I got pmdd, I know I can be difficult. I wrote all my flaws down on paper for him when he told me ‘you think your perfect! ‘ I asked him to tell me his flaws, he won’t. That was 6 yrs ago. He refuses to take any blame. The bathroom was rotting, so I had to force him to fix it. He now says I spend all his money. I just can’t win. But I hit him. I lost it and I hit him.